Got letter from neurologist sumerising my last appointment and the symptoms he lists I have never had and so have never said anything about. He has not mentioned the symptoms I do have, and in the appointment he said I had small fibre neuropathy in his letter he says possible SFN. He also suggested a drug that we discussed in the consultation and discounted then goes on to say if that doesn't work to try tregatol which he actually prescribed at the appointment. Honestly how I can trust this man to treat me if he can't even get the symptoms right I am so angry

I hope you can find another doctor.

Sorry to hear that. It sounds like we go to the same neurologist.

My appointments are 6 weeks apart and my neuro never remembers me.

Hi,
I would bring this note to your next appt and discuss it with him/her. If you think this doctor is worth another try. Once they realize that they made mistakes and you caught it, some of them will be sure to be attentive and not do it again.
Hopeful

I am going to discuss it with my gp but I know she is already happy to refer me to someone else for a second opinion, it just makes me so cross, I think I may write to him directly actually. I feel like I had a diognosis which I was just coming to terms with and now he has put doubt about that into it :/

Sounds like he was reading another patients chart doesn't it ?

I agree that's it's time for your nice GP to find another neuro for you. Your neuro never offered the skin biopsy to you did he ?

I was extremely unhappy with my neuro to begin with but he got better with each visit so I'm guessing he just has to get to know each patient. I don't think yours will be going in that direction.

Are you still on the gaba ? How much ?

So sorry you are going through all this....until I got a true dx I was just so upset all the time.

Debi from Georgia

I went to a neurologist at Johns Hopkins for a second opinion on the advice of my local neuro. He was extremely competent and confidence inspiring, but couldn't help me as there is no treatment for hereditary neuropathies and the diagnosis stood. Still, I felt good about the visit...UNTIL he said "you can stop the IVIG, that won't help you."
I have never taken IVIG treatments. Did he read my chart?
Sometimes doctors are very frustrating, I am sorry that you had this experience. If you go back, certainly bring it to his attention right away.

If you feel he is approachable, you might want to go in and talk to him about how you feel and find out why he worded the letter the way he did. I am not positive about this, but I think definite diagnosis of small fiber neuropathy requires a punch biopsy to clinch the diagnosis.

Sorry, I know it it is frustrating...

Cathie.

He could have gotten your chart mixed up with another. It does happen. Some doctors see way too many patients and have to keep the revolving door going, spending 11 minutes per patient in order to make money. I'm not saying that's what happened in your case but it is possible.

A reminder that even when we are in bad shape, we still have to be our own advocates and keep everything in order, as challenging as that may be.